As Unique as Her Name: Alsae's Story

One thing that is so important to me as a member of the special needs community, is to use my voice to not only educate others but to bring them together as well. I know how comforting it was for me to meet families who's children also have limb differences, feeling the love and acceptance from complete strangers who in that moment became friends for a life time. One of those people, Mallory, has a very special daughter who is as unique and beautiful as her name. I'm hoping that by sharing their story, and with your help, we might be able to bring them together with other families who share in their journey, and know the road they are traveling. This is Alsae's story.

Always happy, all the time!

Mallory and I met through the Lucky Fin Project. I was desperate to meet families, and wanted to organize a get together for soon after my husband's return home from Afghanistan. Mallory instantly volunteered to help plan the get together. We exchanged phone numbers, the texts started flying back and forth, and the rest as they say is history. We declared our daughters to be best friends, imagining them growing up and staying in contact just as Mallory and I do; always there to rejoice in their accomplishments, and pick each other up when things get tough. At the get together, we sat and compared stories, marveling at the thought of our special girls bringing us together. Our girls are only 38 days apart in age, and both have limb differences, but Alsae has had a much harder road, one that her and her family have handled with such grace and optimistic outlooks.

The list of Alsae's different diagnoses is long, and the list of surgeries and future surgeries is even longer. The point of me discussing all of her diagnoses is not to elicit pity, or feelings of sadness. Alsae is a happy toddler, she always has a smile on her face, a twinkle in her eyes, and the videos of her shaking her booty to "All About The Bass" would bring you to your knees in fits of laughter. Mallory has fought tooth and nail for every inch of progress they have made. After being accused of having postpartum by one doctor who didn't take her concerns seriously, assuring her that Alsae's neck was fine and that her refusal to eat was most likely reflux...advising her to add cereal to Alsae's feedings, Mallory knew in her heart there was something else going on and continued to fight to find the answers. Even after three months of fighting with that doctor over the list of growing concerns, Mallory was still being viewed as the overly paranoid mom, and was turned away from bringing Alsae into the office, something I cannot even fathom as a mother. Seeking help elsewhere, she found a new doctor that listened to her concerns and took them to heart. Finally after months of living in the dark, a geneticist finally gave Mally and her husband the answers they had been fighting for: limb reduction, and the rare diagnosis of Microgastria, a condition so rare that there are only 60 reported cases in the United States. In Alsae's case, her stomach is shaped like a tube instead of a pouch, making it hard for her to handle much more than an ounce or two of food during a feeding. Mallory would check in with me to find out how many ounces Addy was handling during feedings, and how much weight she was gaining, always concerned that Alsae was underweight and miserable during feedings. A g-tube has helped Alsae gain weight and made it possible for her to handle small feedings all night long.

Alsae's kidneys are smaller, and she has a splenic anomaly, both attributed to her Microgastria diagnosis. Her kidney's function normally, but extra precautions are taken because of her spleen abnormality. She has a small hole in her heart, one that they are watching carefully to ensure it does not become any larger, and hopefully fixes itself.

Right now, Alsae is currently at Helen Devos Children's Hospital in Grand Rapids, Michigan rocking a very bedazzled halo traction device in hopes of helping straighten a fixed rotary subluxation of the neck. Her C1 and C2 vertebrae don't line up properly, something that usually happens with serious infection or trauma, but Alsae's is congenital. This is thought to be the cause of her scoliosis, but that could possibly be attributed to the Microgastria and limb reduction. The fixed rotary subluxation has caused a 50 percent narrowing of her spinal chord, something that needs corrected. I'm happy to report that Miss Alsae has been doing amazing in the halo device, and that hopefully in two weeks time, they will have a set plan of action including a surgery to fuse her neck! This is a huge accomplishment for both Alsae and the medical team, as this line of treatment has never been used to help fix a subluxation! This will hopefully eliminate the need for Alsae to be in a vested halo apparatus for another several months! I couldn't be happier about her progress, it's been truly amazing seeing her take all of the therapy with a smile on her face!

Alsae's limb difference, an ulnar deficiency (an efficiency according to her rock star mama!), means that her ulna and radius are shorter than average. Just like her best friend Addy, Alsae figures out how to do just about everything! It's so fun to watch our girls figure out the world around them, and learn to do things in their own special ways. Mallory has been a pillar of strength through it all, she was the first person that really put Addy's limb difference into perspective for me. Even with so much going on in her life, she always checks in to see how the kiddos are doing, and to update us on Alsae's progress and the happenings in their lives.

Alsae is an amazing little girl, she continues to prove to all of us that she is truly something special. Her amazing smile and sweet personality are infectious, you can't help but smile when she's around! I know that Alsae is the product of her environment, an amazing set of parents that are her number one fans. "I always go with one of my favorite bible quotes and tell her that she is fearfully and wonderfully made, just as God intended!" She's a blessing to everyone in her life, and hopefully sharing her story will bring her together with other families traveling similar journeys! And yes, I will post updates about Alsae as I get them from her mama, any reason to put up more cute pictures, right?

Alsae being admitted for her halo device, look at that smile!

Meeting the cast of "Pirates Code" at Helen Devos Children's Hospital!

The little artist is ready to do some painting! Check out her bedazzled halo...so cute!